PLEASE NOTE: Even though this blog is now dormant there are many useful, insightful posts. Scroll back from the end or forward from the beginning. Also, check out my writer's blog. Periodically I will add posts here if they provide additional information about living well with Dementia / Alzheimer's Disease.

Sunday, August 2, 2015

Manifesto For Radical Inclusion

There is a growing awareness and increased discussion about the inclusion and treatment and stigmatizing of people with Dementia/Alzheimer's. I agree with the move in general but think I have a way to go to fully understand its parameters and/or to embrace it fully. But I am working on it! I am working on it.

As an elementary school teacher I was always sensitive to establishing reading groups according to ability. In fact I adopted an approach which used popular children's literature as the vehicle for teaching reading (instead of the "Basal Reader") and let the students select which book group they wanted to be in based on story content/topic.

If the reading level was way beyond their skills, I would advise the student as well as the parents of the disparity but if all parties, me included, were willing to take the risk and to work extra hard, the student could have the chance to read a "too difficult" book as long as they were able to keep up with the group assignments (which could be tailored) and discussions. The program was successful in most cases. Sometimes a student would request a different book after trying and would feel successful for having tried, not feel a failure for having to change groups.

When I taught, identifying student needs by name was constantly changing. It was a standing joke, "I wonder what they'll call it this year?" For example: on the teacher side it moved, not necessarily in this order, from Speech Therapist, to Speech Teacher, to Speech Pathologist, to Speech Impaired Instructor, and more.

In New York City, I worked with "Retarded Children" at an organization called AHRC, Association for the Help of Retarded Children. Many years later, a new neighbor put me in my place at her dinner table when I replied, "Retarded Children," after being asked, "What level of students did you work with?" 

She explained her crusade, having a child diagnosed with Downs Syndrome, to get people used to "Child First" language. So drop the "Retarded" put "Child First" then use a more agreeable, less stigmatized name like "Developmentally Disabled." So now I can do it easily but in the beginning I had to think about, and stumble over changing from "I taught Retarded Children." to "I taught Children with Developmental Disabilities."

I hope that by now AHRC has changed its name!

But this concept of full inclusion for people diagnosed with Dementia/Alzheimer's has been upsetting my thinking. I am working on trying to understand how that might be possible. And I am glad that my thinking is upset as that means I am pushing past my comfort zone. But I am not sure where I will end up or what I might've to say in the end about "Full Inclusion."

In the beginning, after the diagnosis, we continued living our life as "normal." But the definition of normalcy started changing and before I knew it, and as he advanced with the effects and changes in his brain, thinking, processing, cognition, language etc I realized that my "normal" was very different from his "normal."

I was very happy to live with his "normal" when I could understood it (not always easy) and when it was not moving so fast that I could keep track of it. But often his "normal" was not safe, not healthy for him, not in his best interests, not possible and often he did not even know what "normal" was and wasn't able to express it for himself.

I never to this day lost my ability to love him, to respect him, to take his feelings into mind but sometimes it did get to the child like: "Because I am the parent and your are the child." I never said this but it did mirror those type of interactions.

With Gregory, as he slowly lost his abilities and needed more and more support, it was not possible to fully include him in all activities. We continued going to the Opera, or theater, or entertained at home or went out to restaurants with friends or traveled in the U.S. or Europe or Mexico. But slowly the inclusions had to change.

Often it would take longer and longer for him to recover from an active party so I would be more understanding and expect less of him. On vacations, sometimes of a month's duration, Gregory would be active, energized, and happily enjoying his time during the vacation but when we came home "reentry to routine" would become more and more difficult and confusing for him as well as for my knowing how to handle his needs.

Gregory was not aware of many of the details of his changes so I had to be the decision maker. I did it with respect, good judgement, keeping him in mind. I always made decisions after talking to him about it, sharing what I thought were the pros and cons, and helping him understand my thinking. But in reality I was the ones making the decisions, not him. Luckily he deferred to me and knew I had his best interests in mind.

A friend of ours noted that even with Gregory's reduced abilities, I always thought of us as a couple: we decided, we will do this, we will do that, what we have decided is...

I had to decide that he could no longer drive the car, I had to decide when we needed to employ a "Companion" to go on walks with him or to spend the day keeping him company when I could not be home. I decided that thriller or violent movies or ones with too much action were not good for him so neither of us watched those types. Eventually I decided what he would order at the restaurant because the choosing was causing him discomfort. I made decisions easily if only because I know him so well.

When, as the result of Dementia/Alzheimer's, a person can no longer take a realistic view of their world, of their abilities, of their perceptions of things ... how can you go for "Full Inclusion?" When he can no longer write, why include him in a writer's group? When he can no longer paint, try easier painting methods, eventually move to finger painting, but when even that doesn't work, I do not think including him in a painting group is a good idea.

Gregory went through the above changes in ability with my being able to support him and be creative about our approach. He is now unable to do most things, especially he cannot initiate things by himself. So instead of "Full Inclusion" I am happy to find a "Reduced Inclusion" type of activity that he can still enjoy, even if I do all the work for him.

With Gregory's language so far gone that he cannot discuss his needs and cannot even process internally his thoughts or needs, I have decided on anti-psychotic drugs to help keep him contented and happy and not fearful of things like getting his feces/urine soiled pants changed, or from fighting even the most loving sponge bath instead of a fearful water shower. 

The use of drugs is frowned on by many people, and I would never have Gregory "drugged into a stupor" just to keep him quiet or to make him easier for staff to handle. But drugs when administered thoughtfully serves a purpose. He needs to get changed and he needs to get cleaned up so why make him fight through it as opposed to numbing the edge of frightening activities that must be accomplished?

He doesn't have to be happy all the time, and frightening activities should not be forced but for Gregory life is frightening, and I will always be there for him and make sure that I do what I can to make his life easier and more friendly, even if I have to make decisions that might "alter" who he is. In some ways with the Dementia/Alzheimer's at this advanced stage, he is no longer who he was and I am the one who can change my expectations about how he spends his days and what makes sense for him. I know he would trust me and if the tables were turned, he would do the same for me in that same loving caring way!

He is content in his wheel chair, is content on "going for a walk" in the chair around the unit or outside in the garden. He likes to listen to music in the room or on his headphones, he enjoys "South Pacific" the musical on DVD. He likes looking at photos of family and having me read aloud to him, even if he doesn't understand all I read. For Gregory, total inclusion, is living a greatly reduced, expectation from others free, safe and happy (even if drug altered) existence and I am OK with that.

More thinking is necessary but so far this is what I think. "Full Inclusion" is not possible when the disease affecting a person is of the brain, requires thinking, problem solving, discrimination, generalization, cognitive skills, etc etc etc, especially when those skills are no longer available to the person. Is it fair to hold high expectants for a person when mentally those expectations cannot be met.

Earlier in Gregory's diagnosis, when we would run into a stumbling block, like his wanting to read a book but not remembering what he read (which actually was OK - who cared if he didn't) but also not remembering to turn a page or mark the page he was on, or remembering how to use his reading glasses, even with my help, and then getting frustrated over those lacks, I would get to frustrated with him and at myself for not being able to solve his problems. Rather than letting him stew over reading his book, I started reading aloud before bed. This helped. But this is reduced inclusion as far as I can tell.

I would try to explain to friends and family what it was like. Gregory would want me to help him with his reading but he couldn't understand why it wasn't working and couldn't understand my help. "It is," I would explain, "like your son pleading and pleading with you to teach him how to ride a bicycle like the other kids in the neighborhood but not being able to because he was born without arms or legs."

You can pull him in a wagon, you can safely drive him in a seat on your bicycle, you can run along side him on a stylized bicycle of his own ... but you never can really teach him how to ride a bicycle in the way he wants you to!" What can you do but live with your sorrow and try to compensate in other ways. He will never be able to be included fully in a bicycle race with the neighborhood boys no matter how hard you try.

 I'm sure you know I'll be continuing to think about this and sharing my progress here at the BLOG. Come back and visit.


  1. Dear Michael, your approach on this matter is mature, realistic as well as kind, supportive and loving. To accept and then to live life to the fullest (possible) in the NOW is the ultimate in Living Life Well (with or without dementia, cancer, etc.) I agree with you and believe I am qualified to do so because I live well with Vascular Dementia and have full inclusion in my life and have selected as early as necessary my neurologist, psychologist, psychiatrist, curator and recently the care facility I want to go to when the tme comes when I cannot live on my own any longer. I am still part of family and community and my opinions are respected although I know (although not always realising) that I am changing, loosing skills and abilities but I also know that I will always be fully included by everyone in line with the realities at hand. Thank you for your wisdom and continued inclusion of Gregory in your combined life as a couple. My partner have unfortunately passed away 3years ago but I just know that he would have been as excellent as you are with and for Gregory. May your life be filled with joy and peace. Maarten (South Africa)

    1. Maarten, We do not do this for the accolades but receiving comments like yours now and then does a lot to help one believe in self and to continue to feel JOY even though it is carried on the shoulders of SORROW! Gregory was never able to share how he felt going through his journey, I based myself on my observations and my knowing him well over the last 40 years. So hearing from people like you and Kate Swaffer gives me inside into his knowing that I love him and that all decisions have been with love. based on best practices, and in his best interests. My thoughts are with you and I wish joy and peace to you as well. Fondly, Michael


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